Development of Patient-Driven Tools for Care Transition for Young Adults with Chronic Illness

Grant Application

Jonathan Pletcher, MD, and Elizabeth Miller, MD, PhD, of Children’s Hospital of Pittsburgh of UPMC

Proposed Innovation

Teenagers and young adults with chronic disease or disability, such as autism, cerebral palsy, sickle cell, HIV, and other complex medical conditions, face significant challenges when transitioning from pediatric- to adult-centered health care. Illness can frustrate their ability to take responsibility for their own health, and progress in managing their condition might be lost.

To address this issue, the Children’s Hospital Advisory Network for Guidance and Empowerment (CHANGE), project enlisted youth leaders — patients with disabilities and chronic illness — to develop transition tools aimed at engaging and empowering young patients to assume health care responsibilities of adulthood. With training and support, these teens and young adults helped frame the vision of what could and should be.

Improvements

The CHANGE board — 14 active youth leaders working in partnership with 40 involved Adult Allies — met regularly to develop not only their own skills as leaders, but also the framework for a successful transition road map. Their goal was to create an interactive transition road map, or decision tree, to guide patients and caregivers, involve patients in shared-decision making, and nurture both patient independence and health. In addition, printed materials, videos, patient and caregiver checklists, visit scripts, and training workshops were developed to help ease the transition.

 

Outcomes

CHANGE board members were able to develop a youth-driven plan for a better transition process. The youth board coordinated workshops, presented at local events, planned and participated in leadership retreats, initiated social activities, and produced written materials and video vignettes focused on educating a larger audience about transition. The tools that were developed helped to empower youth to take greater ownership in their personal health care.

In addition, CHANGE youth leaders demonstrated maturity and growth as they learned to think strategically and act professionally in order to accomplish a shared goal. Moving forward, board members continued to develop their own skills as they developed the tools to facilitate a better health care process for all young people facing transition.